Living with PCL

Updated 30 Jan 2018

There’s a lot of support you – and those close to you – might need if you’ve been diagnosed with plasma cell leukaemia (PCL). As well as medical information about your condition, other information will be important – such as how to tell people, how to look after yourself emotionally and physically and practical advice about things like finances.

Looking after yourself

When you're diagnosed with leukaemia, and if you're having treatment, you might find that there's a physical impact on your day-to-day life.

Changes in your condition

If you've finished treatment, you may wonder whether there are any specific signs or symptoms you should look out for. Because treatment can have an impact on your immune system, it might not be working properly so a minor infection could become more serious if it’s not checked out.

It’s always a good idea to contact your healthcare team if you have any symptoms after your treatment or any changes in your general health. There’s lots of possible symptoms you could see – everyone’s experience will be different depending on which part of their body has been affected. If you find any new swellings, make sure you contact your healthcare team. If you’re in any doubt you should seek medical advice straight away.

Keeping active

You might feel tired a lot (fatigue). This might be caused by your treatment or condition and isn’t the same as normal tiredness which improves with rest and sleep.

While even the idea of doing something can be tiring if you’ve got fatigue, try to keep as active as you can because evidence shows that this could help to make your symptoms less severe.

Although staying active may help, there’s no evidence that any particular exercise programme can improve your condition or how you respond to treatment.

Shingles

Shingles is the infection of a nerve and the skin around it. It can affect you if you’ve had chickenpox, even if you had it a long time ago, as it’s caused by the same virus which can lie dormant in your body for years. You’re more likely to get shingles if your immune system isn’t working well – for example if you have leukaemia.

Shingles has some quite obvious symptoms. If you think you have it, let your GP or specialist know as quickly as possible (within 24 hours of the rash appearing is best). If it’s treated early, the symptoms won’t be as bad.

Symptoms include:

a rash – blisters filled with fluid which burst and form sores which then crust over, usually confined to one side of the body

an itching, tingling or burning feeling

pain where the rash is.

You can’t catch shingles from someone who has it, but you can catch chickenpox from someone with an open shingles sore, if you haven’t had chickenpox already.

Diet

There’s no evidence that any special diet will improve your condition or how you respond to treatment. However, you’re likely to feel fitter and healthier if you follow general advice on good diet from your hospital or GP.

You’ll need to take extra care to avoid infections that you might get from food. Your body won’t be able to destroy germs and resist infection as easily, so be careful about food ‘use by’ dates and things like keeping cooked and raw meat separate in the fridge.

Vaccination

It’s often a good idea for leukaemia patients to have the flu vaccine each year – your GP might contact you about this but if they don’t then you can request the vaccine yourself.

Babies who have received the oral (by mouth) polio vaccine will pass live virus in their stools (faeces). Because of this, avoid contact with their nappies and the contents – as well as the risk of general infection from their stools, there’s a risk of getting polio.

Where to get help and support

Many people affected by blood cancer find it useful to call on the expert information, advice and support offered by a variety of organisations, including ourselves. Here are some we recommend.

Bloodwise

We offer patient information online and in free printed booklets, and have an online community you may like to join.